Introducing Ian to his new WISH classmates

I wrote this and posted it on the Facebook site for WISH Class of 2029.

Please excuse me for the length of this post... ;)

As we all begin this exciting road together at WISH, I wanted to introduce my amazing son Ian Abercrombie, in KA. He often stands out from the crowd with his actions. I thought I’d share some info about him so you are prepared to answer your children’s questions if they arise.

On the medical side, he’s had quite a difficult journey. The list is extremely long but his primary diagnoses are: Megalencephaly Capillary Malformation (M-cm), Bilateral Perisylvian Polymicrogyria (PMG) and, more recently, Autism.

I’ve listed some of the ways I have answered questions over the years:
- “He’s had a rough beginning and still is working on catching up."
- “His brain works differently than yours."
- “Everyone has their strengths. You know how you are amazing at xx and yy, well Ian loves to read and spell.”
- “Ian is still working on focusing in class and learning how to use his quiet voice. Maybe you could help him by modeling what that means.”

Ian loves to sing, laugh, read and play. You’ll often encounter him sharing the passages from his favorite books. Playing in sand, dirt, leaves, or anything else that is of, or connected to, the earth and provides much needed sensory feedback for him. His favorite TV shows are Thomas, Curious George, Little Einstein’s, Word World, Sid the Science Kid and Wild Kratts. If you, or your child, know the names of any Thomas trains, that would be a great way to connect with him.

His favorite games are “Ring Around the Rosy”, acting as if you are “wobbly & woozy” and anything else really silly that makes him laugh. He loves when people join him in singing, Wheels on the Bus, songs from Frozen (“…Snowman” or “For the First Time…”) or songs from Rio. He’s very in tune with his feelings. When people share what they are feeling with him, he gets it. If someone doesn’t understand what he’s saying, he can type it on his iPad. He gets really silly while playing ball. Reading books is his favorite quiet activity.

Ian loves to have play dates! We work them around his therapy schedule. Our home has a play structure, a trampoline, a painting area and tons of toys. We like to make messes and have fun!

By sharing some major accomplishments, I can illustrate how far he’s come. We try to focus on his progress rather than his challenges. When he left the NICU, he was fed primarily through his gTube, now he can eat more than most kids ;) This is another condition where he might steal preferred foods & could eat a whole table of pizza or a dozen bananas without stopping. His gtube fell out for the last time at 3 and we never put it back in For the first 2.5 years of life he needed 24/7 supplemental oxygen. His last O2 study in June released him from any required use of oxygen, even on airplanes, which was his last pulmonary goal. He took his first completely spontaneous independent steps on his 3rd birthday, now he goes “fast” across the yard. From the time he was 2.5 until 3.5 he lost all sounds besides a grunt. Now you will hear him singing and exclaiming from many classrooms away.

On a more advanced side, he has been able to read and spell since he was 3. He would take the letters in the bath and spell out words tricky for even his older sister (by 3 years). We don’t know what happened to his sounds but after we gave him a “voice” back via an iPad with Proloquo2Go, he showed us he had so much to say. At the same time, his verbal sounds began to return, and we have worked on one letter sound at a time since that day.

We know he is an extremely bright and aware child. Our goal is to enable him to share all that he knows with the world. Academically he’s in a good place. He really wants to socialize but has trouble working out how. This is our main focus this year at WISH. Here is where we could really use your help. If your children come to you with questions or concerns, feel free to share what you feel is appropriate for your child. And it would be great to encourage them to try to connect with him when they get a chance.

To be honest, we do not know the potential of this remarkable boy. But we will continue our quest to reach it, as every parent does. There are no limits we will place. We will continue to work with him at his pace and challenge him all along the way.

Thanks for letting me share his story. I also have been keeping a blog since placed in the hospital before he was born http://mommapod.blogspot.com/Please feel free to ask my questions along the way me atshariabercrombie.com 310-699-7621.